Pages

Friday, June 3, 2011

Houston Prep

First, an update on Miss Madison……looks more and more like the issue was a pseudo-obstruction that started on Sunday as there have been no other signs of illness associated since. As of today, while still not on a normal diet, she is tolerating more and more without issue, and we’ve been able to stop regular dosing of phenergan as of this morning. Additionally, her bladder and lower bowel have “turned back on” also. All leaving me with a sigh of relief that this was short lived and with the help of our ped, handled exceedingly well. Fluid intake is still presenting problems by mouth…..Madison’s swallow has been weak for a long time now and when stressed it appears the energy it takes to protect her airway becomes too much and she does better with fluids through her g-tube. This is nothing….just hook her up every couple of hours and bolus the fluids she needs, and she’s good….and I know she’s getting what she needs without expending energy she doesn’t have. At the rate she is improving, I expect we’ll be on a normal diet by Saturday….and then we just pray this doesn’t happen again anytime soon!!

Now back to the intended post…….

One would think after the number of years that we have been doing the medical thing, and going into our 4th year of traveling to Houston (our third of four distant locales we have traveled to for medical care over the years), getting it all arranged, getting us there, and getting prepared for the appointments would be old hat, and dare I say, maybe even easy. And yet, it never really does get to that point. There are, quite simply, just too many people, which can lead to too many complications, for it to ever become easy I have decided.

I have my end pretty mainstreamed. The kids summary letters only change here and there, as new medications or diagnosis come into the picture. I generally have a running list I keep of the things we need to talk about with the doctors. Both of these are generally a pretty quick copy, paste & print and we are set. I know who to call, how to word things the right way, when to be nice, when to be forceful, and how to navigate the world we live in.

However, this world we live in doesn’t always involve others that have the same skill in these respects that I do. They don’t understand that the 2 phone calls they had to make to me, that they are getting PAID to make, are only 2 of 20 I am taking that day…and NOT getting paid for. They don’t understand that as complicated as it is for them to input the information for three kids at a time, that I have relayed that information 15 times that day, on all three….and am tired of hearing myself talk!! They cannot comprehend that the “quick fax” they would like me to send is one of 10 requested that day. I could go on and on, but you get the picture.

Mostly though, the thing that is impossible for them to “get” is that OVER being my children’s medical secretary, I am their MOM, and the time they are taking with me is taking away from that far more important role.

We head to Houston for the third time this year on Monday. My goal for the year of getting better control over the medical end of our lives IS working considering we were there almost monthly for the last two years!! What is not working as well as I would like is the time it’s taking to get us there, but perhaps it’s time to just accept that part and move on. Perhaps all I can do is pray for the people I have to deal with that they can step into my shoes just a little and make the process as easy as possible for me. Thankfully, in my own Pollyanna way, all it takes is ONE of the people going above and beyond to erase the frustration I feel for the others that cannot. Thankfully there is almost always that one person that allows me to stay sane…LOL.

We have a relatively light week this time (another one of those goals I had that is coming along nicely)…..All three will see the pulmonologist and the immunologist, and Chance has a VEEG to get through.

Thankfully all the prep happens BEFORE we go, so once there we can focus in on our appointments, and just as important, seeing our friends and family and having some FUN!!

About Us

I am Heather, married to my high school sweetheart, Michael, for 28 years and we are the proud parents to three amazing young people. Chance is 23, Madison is 20, and Abigail is 18. All three are awesome young people that any mom would be proud of. They are kind, giving, loving, resilient, confident and selfless. They all also deal daily with the effects of Mitochondrial Disease (Mito for short). While they have Mito, they are not defined by it. We welcome you to this exceptional life we lead!!!